Personhood in dementia

Niamh Hennelly

Posted: 22 October, 2016

To mark our ‘Research for a Healthy Life’ theme for October, and in partnership with the Health Research Board, we are sharing the second of our series of profiles on research projects by Irish Research Council-funded early career researchers who are working under the supervision of HRB-funded principal investigators. Today we hear from Niamh Hennelly, a scholar at the Irish Centre for Social Gerontology at NUIG, and her supervisor Professor Eamon O’Shea.  Niamh’s research, which was supported in its first year by a Hardiman Research Scholarship, explores personhood in dementia and its importance for care relationships, service delivery and regulatory instruments. Professor O’Shea is the Director of the Irish Centre for Social Gerontology. Earlier this year, he was selected as Research Leader of Dementia Care as part of the establishment of a new National Centre for Social Research on Dementia, supported by significant investment from the HRB and Atlantic Philanthropies.

Professor O’Shea: Living with dementia is a reality for about 55,000 people in Ireland. Our interest here at the National Centre for Social Research on Dementia is on practice and policy for people with dementia. In particular, I have spent a whole research life interested in caring relationships and how the self and identity can be maintained and enhanced in dementia care. I was looking for someone equally passionate about the nature of relationships within dementia care to do a PhD with me on personhood in dementia, and Niamh fitted the bill perfectly.

Niamh: I was delighted when the opportunity to do this PhD arose as the human and social aspects of dementia are fascinating to me. I was equally happy that it would be under the supervision of Prof. O’Shea who has extensive experience in dementia care research. Personhood in dementia can be traced to the work of Tom Kitwood in the UK in the 1990’s who spoke about personhood as a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. In essence, it embodies treating the person with the dementia as a person in the first instance. People with dementia have long experienced instances and behaviours which has denied their personhood, for example being ignored, referred to in the third person or treated like a child. Prof. O’Shea remembers reading Kitwood’s work with excitement when it first came out and incorporating it into the Action Plan for Dementia for Ireland which he wrote in 1999.

Professor O’Shea: Fifteen years after the Action Plan, one of the overarching principles of the Irish National Dementia Strategy (2014) is to support the personhood of the person with dementia – better late than never I suppose, but so much time was lost in the interim as nothing much happened in relation to enlightened person-centred policy-making for people with dementia. The establishment of personhood as a principle for the Strategy was, therefore, a really important breakthrough, but now it must be followed through with real practical advances that put people with dementia at the heart of decision-making about their own care. Unfortunately, one of the on-going difficulties is an absence of any real understanding of what personhood means in practice for people with dementia.

Recently, Niamh and I jointly presented research on personhood to the annual meeting of the Irish Gerontological Society. We conducted a content analysis of how personhood was referenced and conceptualised within submissions made by the public, non-governmental organisations and professional bodies to the development of the Irish National Dementia Strategy. The concept of personhood was not referenced in the vast majority of the submissions. Personhood was especially absent from submissions that emphasised biological models of care. If personhood is to be supported by the Strategy then a better understanding of the concept is required, particularly in relation to its implications for day to day care arrangements, including resource allocation decision-making.

Niamh: The next step, for my research, is to carry out qualitative interviews with people with dementia and their primary caregivers, both informal and formal. I will explore the nature of caregiving relationships in dementia to determine how personhood can be protected, sustained and enhanced. The research will identify the individual behaviours and communication strategies that best support personhood in dementia. A major goal of this research is to translate the findings on care relationships into concrete strategies for policy and planning in dementia care. In particular, by identifying the component elements of personhood, the work will allow for the measurement and regulation of person-centred care strategies to examine if personhood is being reflected in the day to day experiences of people with dementia. When we get to that stage, we will have moved from personhood as a principle to personhood as a reality. That can only be good for people with dementia and their families.

Disclaimer: The opinions expressed in our guest blogs are the author’s own, and do not reflect the opinions of the Irish Research Council or any employee thereof.

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